Cancer Survivors Network

Hey Joe.....what is different about your "version"? I was diagnosed 7/08 with stage iv lung cancer due to one metastatic site in some lymph nodes under my arm. Just wondering what your story is?

suebloom:

I was diagnosed with head/neck cancer the first of september, 2005, surgery in october, chemo and rads into january of '06. In June of '07 results of a cat scan showed 'cancer' across both of my lungs, shotgun-spread. No surgery, no rads, only palliative chemo-therapy offered, and the advice that I had 'a minimum of ten months to live.'

In the meantime, I started taking Keflex for an infection in my jaw and lower face area. Subsequent CAT and PET scans (about two months later) showed that the 'cancer' had disappeared, with one exception: it had clearly been a lung infection of some sort, misread by the experts.

Ultimately, the one remaining node was removed and biopsied, and though it proved to be squamous cell cancer (same as my head/neck cancer) they decided to remove that lower right lung lobe since there was no evidence of any cancer around it. (The node was too small to stage or to determine whether it was indeed metastasis from the tongue/neck.)

Last november ('08) I was diagnosed NED and received the same dx just three weeks ago.

I have a page and a blog on this site, if you would care to read more.

Best wishes to you, suebloom!

Take care,

Joe

Joe, to your last comment... as my friend said "We are ALL Stage IV."

My dad was just diagnosed with Cancer Unknown Source - Adneocarsinoma. It has metastisized. It is in his lungs, mediastinum and right femur. Someone asked me if his cancer is terminal? I said, "Aren't we all terminal?" I don't like that word really and choose not to refer to my dad's cancer as that...he just was diagnosed and started three types of chemo this week. They can't operate so I am praying the chemo slows this type of cancer down...I hope you have a very nice day.

Hi, My younger sister, 52 years old, was just diagnosed 6 days ago with lung cancer which has spread to several other organs. Today she starts chemo. There are four of us girls and we are just beside ourselves with worry. Our parents are in their late 70's and are equally blown away. Any words of encouragement would be greatly appreciated. As for everyone else going through the same difficult time my prayers are with all of you. Thanks.

I am 3an1/2 years an going
Bless ya and prayers to all of you.
Greg

Dear Greg,

I am VERY thankfull to GOD that you are a survivor. It make me happy to hear that there is "HOPE". Eversince my dad's diagnosis, I have gotten much closer to GOD and I owe it to my DAD. At the same time, I pray to GOD to keep my dad safe.

My question to you is: CAN you please tell me what treatments did you receive that you are a survivor now? I have been a nervous wreck eversince I found out about my dad. To me, he is EVERY THING I have to live for. God Bless You. Jerry

My dad and I were told dec 3 that he had stage 4 non small cell..he said 2 months without chemo 10 to 12 months with chemo he has has 6 treatments and now he has what they call chemobrain its so horrible..For the 1st time Im not happy about being the only child..so its just me and my daddy e-o doing the best we can...I love him so very much... nubis how long has your husband had cancer...and I will add you in my prayers

I read a story on csn I believe, been a year. Anyway she was talking about she did everything and moved into stage 4 lung cancer, she was put on a different chemo and guess what? She beat the cancer. So nothing is short of a miracle. Everything can effect people differently and you never know and never never give up hope. I am an ovarian stage 3. Been off and on chemo seven years. Anything can happen- miracles do.
Prayers and Hugs to all
Sandy

hi my name is Patti....my husband was first diagnosed with nasophargeal cancer in 2005 and received treatment for about 7 wk of radiation and then returned again in 2007 once again he received radiation with a shot of chemo 1x a week..Here we are in 2009 and he has once again been diagnosed with this dreadful disease....this time it has spread to his lungs..about 2cm....we will be going away for the Easter Holiday....and then he will start chemo again....no radiation.....I also cry each and every day ....but out of his vision...Dont't know how I will control this one when we are away.....He has been depressed ...but not admitting to it.....Today I told him to get out of bed or we will cancel our reservations.....I love him deeply ...and been married for 40 years...and can not stand to lose him...But told him that he also has to fight and not give up....He's a Marine....And as we know they are the "Best"....so I told him once again to get out of bed and let's fight....We were told that this time no cure....hello there never was...but only that they can "control" it.....I truly believe that this time it will do the job....I have so much faith...that God will carry us through this...thanks for letting me vent...feel free to do the same

Dear Patti:

I can well understand your distress. My husband is a six year prostate cancer survivor and I am a 4 year nonsmall cell lung cancer survivor. When your husband's Doctors say they can "control" it - they mean it. I know quite a few people that are very long term cancer survivors through my cancer support group. One lady has been treated for metastatic ovarian cancer for 12 years now and she and her husband live active and full lives! I know breast cancer survivors of 20 to 30 years! Our group has long term survivors from every type of cancer imaginable. Metastatic disease can be controlled, you better believe it!

I have been on both ends of cancer; I've been a caregiver for a loved one and I've been a patient. If I had to pick, I would say it was harder going through my husband's diagnosis that mine (because I love him so much). You sound as if you two are very much in love. If you allow yourself give in to the "doom and gloom" thing; you're going to be miserable and so will he.

You are a Marine's wife - you can do ANYTHING! You are accustomed to sacrifice (when he has been on deployment) and you are TOUGH! This does not mean you cannot feel the pain or cry the tears. I have a friend that set a timer for 5 minutes every time she wanted to cry and sometimes had to set it the second time but, she did not give into the doom thing; she stayed positive. Today she is a 10 year breast cancer, double mastectomy survivor!

Put your arms around your husband and tell him something like ... "Our love is strong and we can do anything. We've gone through bad times before and we will do it again. Let's get out there and fight!"

Arm yourself with information. Learn everything you can about this type of cancer and the latest treatments. Don't be afraid to question your doctors or suggest things. You have to be your own advocate in the medical community today. A good doctor will not mind your questions/suggestions. Go to the MD Anderson and Sloane Kettering web sites and get some good information from the experts.

By the way, in case you do not know, when you are searching for information, nasophargeal cancer will apply, NOT lung cancer - even though the small tumor is in the lung. You will still need to search info regarding nasophargeal cancer - the original site.

Sorry this "Pep Talk to the Troops" went too long but, you two sound like fighters and I think you can win this "War".

Best regards,

Madelyn

I wish you and your husband the best - he is so young!! Keep praying and loving and him to pieces. I'm also a strong believer in natropaths. Google ESSIAC Tea - see what you think. My mom is on it and I swear it in conjunction with radiation, it is shrinking her tumor. Ya never know - if anything - it is a good body cleanse.
Take care!

He is just 43 and has terminal lung cancer. It has spread over the last year to other parts of the body. It is so hard when they are so young. He too has his good days and then bad. Keep praying,try to stay strong, That isn"t always possable. And yes we do have to cry and let our feelings out. Our body can't hold everything in. My daughter-in-law also has to find time for self to just let things out. It is so hard kowing they are in pain and not being able to help. Never stop fitting and trying new resources. Our prayers are with you.rosewood62

Nubis,

Our story is about the same. My husband went from perfect health to down with what seemed like the flu. That was the 1st of April. Due to not having insurance or extra pennies for doctors,he tried to fight what he thought was a really bad cold. On May 18th he could fight no more,could not breath,and finally gave in to trying the emergancy room. Of course they took him. Within a few hours he had a tube in his left pluerl sack to drain the fluid which was causing him not to be able to breath. For the next 12 days he stayed there and they did what they said they never do:sent him home with his chest tube. On May 21st they told us he may have cancer,on May 26th they told us it was mesatitic adrenocarsinmoa,stage four.
From there we have walked a path filled with PET Scans,MRI's,Ultra-sounds,enough blood work to drain a cow,EDG and Colonoscopy,which the colonoscopy had to be stoped because of the omental mestasis at the thrid sigmoid of the colon. From there,two weeks ago this Thuresday he had his medi-port,much to our displeasure placed,as we would have rather went for the IV's instead,however,the doctors refused our request.
Now we sit and wait for answers to the day when chemo will start and if it will really do anything at this point. He has lost over 40 pounds since April,is in non-stop pain. The doctors answers:take this take that,however,they do not offer a schedule which works. This brings us to today;his birthday. Today I have done more research and we are going through trail and error phase of managing pain,pain meds,all in a hope for relief and his desire to eat to return. Has anyone else faced anything like us?

my husband had no appetite at all, he was losing sooo much weight, then they gave him the strongest dose of megace, this is an appetite stimulant...it reallly works...he has his complete appetite back. he was down to 112. and now he is up to 120.thank god. i hope you know about this, if not ask your oncologist to prescribe it. god bless..also ask for a pain management doctor. cuz nobody should have to suffer like that. my husbands doctor was having my husband go thruogh the same darn pain and recentely when he was in the hospital a social worker recommended a palliative care doctor(pain management) and they switched his meds and added some...some are extended release and others are for breakthruogh pain(for when pain comes on strongly and all of a sudden) thats when you need to take something that will relieve the pain at that moment. i hope my info helps, because i really feel for people that are going thruogh that kind of pain, when it isnt necessary.

Dear Seanslove,
I'm so sorry that you are having to watch your husband go thru this horrible ordeal. I can completly understand because my daughter was diagnosed in Aug. of '09 with stage 3b lung cancer. The doctors told her at that time she had probably had it for about 8 months which it means that while she was pregnant she had gotten this cancer. She was first mis diagnosed with pnuemonia until her 3rd visit back to the dr. when he sent her to a plumanary dr. She had 2 thorasentesis & then the news of cancer. From there she was put in the hospital to get a chest tube cause she could'nt breath cause of all the fluid she had. While in the hospital she had a lung biopsy & a few days later she had a talc prodedure done which was suppose to inflate in lung & stop the fluid from building. Well her lung inflated but she still has the fluid. Now she had a plurex catherer put in which she will always keep unless the fluid stops building on its own & we have to drain her lung every night. The dr. put her on Tarceva. She started having back pain and now has a large mass on her tailbone which she had radation for. We had to rush her back to the hospital 3 weeks ago because of severe diarreah & a stabbing pain in her bell. Well she now has a few "spots" on her liver & brain. She spent 2 1/2 weeks in the hospital cause she lost so much weight & was very week. While in the hospital she had a seizure & thats when they discovered the brain cancer. She is having radation on her brain & after she is a strong enough she will start chemo. Before she got sick again she had been excepted to Memorial Sloan Kettering in New York but that has to be put off till she is strong enough to travel. We are hoping to go soon as we feel NY might have the magic bullet.All I can tell you is keep the faith & question everything & make suggestions.If your dr. gets pissed find a new one.I kept pushing on Jennifer's dr. to put her on TPN, which is a feeding full of calories & vitamins & nutrients to help put the weight on, well he finally put her on this and she gained everything she lost plus.I also pushed them into putting a pick line in. Jennifer's veins were virtually non-exsisent so this makes it better for IV's & blood draws, she would have needed one for the chemo anyway. Her pain is being controlled with heavy doses of morphine. She is on a 12hr pill of 60mg plus she has a 30mg morphine which she takes for her break thru pain. This seems to be working well for now. I know the anguish you are going thru & also your husband. Having to stand by & watch & being helpless is very difficult. I'll include you & your huband in my prayers.Just remember you almost have to be your own health advocate. Don't be shy about asking your doctor anything or keep pushing them on his pain meds. He should'nt have to be in pain. We also had to push for the thing we thought our daughter needed. Jennifer has 2 young girls ages 5 months & 3 years. We have now moved in with her & Her husband to help take care of the house & kids. Ask for help. You'll find they are more than willing to help. GOOD LUCK!
Keeping you in our Prayers
Sharon

I can only speak for myself but I have concluded there is no deadline. I believe that cancer can get better, you can be declared cancer free but for how long? When I was told it was back I realized that living with cancer will be my way of life. So I will resume chemo in August and once I have taken all of the rounds this time, I will sit back and enjoy life until it is time to do chemo again. So, if my cancer can be controlled this way, I will be happy.

I have down days too. But it hurts me to read that you all are crying in despair. I wish I could help make things better for all of you. Every night before I go to sleep I thank God for giving me the day. Every morning when I awake I picture myself curled up in God's hands. I have a picture I got off of the computer of Jesus walking on the beach but you can barely see Him. In the picture you can clearly see a picture of a woman He is carrying in his arms. I say to myself that if HE can bring me to it, He will bring me through it.

nancy

I am sorry about your mother. I am a few years older than her and have been diagnosed with stage 2 lung cancer none of my dr. give prognosis they have told me they are not God and just treat my disease their best. I am wondering if anyone else's drs. are like this I myself don't believe in giving me a time I am going to die.If your mother is a fighter than she will know how to deal with this. tell her not to give up.

I too had a Mom with non-small cell lung cancer ..and took care of her. Love her, cater to her her and give her whatever she wants. If it breakfast time, give her her favorite dessert. My Mom's was ice cream or jello. It slid down without any trouble. and she really enjoyed it...Does it really matter what she eats as long as she enjoys it....All I wanted to do was to make my mother confortable and what little she could eat, she enjoyed it...Love her and make sure she knows it.....You are her little angel...so help her fly to God's arms peacefully! take one day at a time...............

Hi there - my heart broke when i read this... i can not sleep either - my mom is going through a similar diagnosis. How is your mom now?? It's hard sometimes to stay positive, eh? I'm trying but having difficulty. Miracles happen EVERY day though - that i know for certain.

My mom is going through a similar experience. She seems to have brain metastesis and they started her treatment a week ago.

First , radiation to the head for 2 weeks (Mondays-Fridays for 10 min). Then the doctor told her to wait for 1 month before starting chemo!!! I am worried that 1 month is too much considering that it can spread even more!

I have done lots of research about the different treatments possible and i have asked a friend from Montreal whose dad has squamous cell cancer. There so much possibilities but which one is the best option?

My friend's dad did radio every week day for 30 min + chemo once every 2 weeks.... He is now in remission.... My mom's doctor said that this is too much and told her to do only 10 min of chemo (and since she is currently doing brain radiation, the doctor told her to have a rest period of 1 month before starting chemo as it could be dangerously toxic!!!)

I know that cancer is everywhere but this is the first time i see it up close.... i love my mom so much and i want and need her to survive this. I feel so frustrated and frightened.....

There's supposed to be this new drug CBLB502 from bio lab pharma in Ohio. Apparently, it puts a tag on cancer cells so as radiation can kill them easier... it has been successful with animals and they have been doing human tests.... apparently, it is supposed to come out in the market soon... but that is all the information i have.... does anyone have more info about this???

I hope to hear from you Mionie and i hope that your mom will get better....
Fran

Fran83 -
I'm fairly close to your Mom's age (53) and diagnosis - NSCLC with mets to the brain. It was only last December when the brain mets were discovered. I had surgery - a breeze - and then 20 or so whole-brain radiation treatments (and 5 more focused sessions), which were less than a breeze and took a couple of months to "recover" from. I say "recover" in a general way - I'm not so fatigued any more but I have some memory problems, never as much as I read about, though.

Anyway, my oncologist also had me wait before starting medication (Tarceva) - it was at least a month. They want to give your body some time to repair itself from damage done by the radiation before slamming it with more toxic drugs :)

As it turns out I was thankful for the break since I had a pretty bad reaction to the first high-dosage Tarceva (better now, slowly increasing the dose), and I can't imagine suffering through that while trying to come back from the radiation. So there are reasons for waiting.

Best of luck to your Mom!

Deb

Dear Deb,

Thank you for your reply. My mom is set to finish her radiation set soon. She did not do any surgery but I think the doctor wants to kill of the metastises and plan to have surgery later on. I am not really sure.

When were you diagnosed and how is your treatment working? Do you do chemo (how often?)?

They are planning to put her on 1st line chemo cisplatin or carboplatin plus paclitaxel.
2nd line chemo: targeted agents or taxol or gen cisplatin....

i heard avastin is a good one but i do not know why her doctor never mentioned it.

I know that she will probably need to rest and strengthen up after the sets of radiation (wbr) but i am just a bit worried that her cancer spreads even more during those weeks that she will not be doing any treatment.

Did you have any complications while waiting for your treatment to start? Was there more spread?

Thank you again for responding. It is really good to useful to hear from people living with this illness and hear that although prognosis is not good that it seems that some people are able to fight it off.

I hope that things are looking bright for you.

All the best,
Fran

I was diagnosed late in 2005, had a couple of months of radiation and chemo at the same time - I had Etoposide and Cisplatin, then Taxotere, all or any of which may have helped to shrink the tumor in my lung. Then my oncologist found a clinical trial for me, a targeted drug, which shrank the tumor still more and kept it stable for 3 years. (although I had absolutely NO bad side effects from the drug except for a day of numbness around the mouth, once a week, other people did, it was cardiotoxic) I would probably still be on it if a mini-seizure hadn't revealed brain mets...no matter how wonderful XL999 was it didn't protect my brain.

As far as waiting, there was no more spread, in general cancer doesn't grow that fast :) I know it's worrisome, though, you can't help feeling like the sooner she begins treatment the better. Remember, though, the radiation is still doing its magic well after her last session - I guess it's cumulative; my doctor wouldn't even do a scan for a couple of months after I finished because it was too soon to see improvement.

Thanks for the good thoughts, Fran, my best to your Mom.

Deb

My prayers are with your mother and your father at this very tough time. Please don't stop trying. Keep hope alive and stay focused. I know it is not easy and to that matter, I must say that until I found this site I feel much better to read other's feedbacks. Trust me, you mother and father will surive. Prayers will help. So, please don't stop praying, and we will all pray for you too. Jerry

Congratulations!

Take care,

Joe

My mother was recently diagnosed with NSCLC adenocarcinoma.
She had a malignant mass in her mediastinum and it spread to her lungs, lymph nodes.
First the doctor said that she was stage 2 but recently we found out that she might have metastisis in her brain and her bones (skull and right upper arm)....

She has started brain radiation to take care of the brain metastisis and she will soon do some rounds of chemo.

What is your story exactly? Where did yours metastisised?

I am getting really frustrated and frightened because we got several medical opinions and each doctor has a different interpretation of the best treatment possible.... Do you have any advice with regards to the treatment that you had.... Did you have radio + chemo...? how often?

i would really appreciate your advice since my mother seems to have the same illness as you do... P.S. My mom is only 51 years old.

Thank you in advance.
Fran

My mother was recently diagnosed with NSCLC adenocarcinoma.
She had a malignant mass in her mediastinum and it spread to her lungs, lymph nodes.
First the doctor said that she was stage 2 but recently we found out that she might have metastisis in her brain and her bones (skull and right upper arm)....

She has started brain radiation to take care of the brain metastisis and she will soon do some rounds of chemo.

What is your story exactly? Where did yours metastisised?

I am getting really frustrated and frightened because we got several medical opinions and each doctor has a different interpretation of the best treatment possible.... Do you have any advice with regards to the treatment that you had.... Did you have radio + chemo...? how often?

i would really appreciate your advice since my mother seems to have the same illness as you do... P.S. My mom is only 51 years old.

Thank you in advance.
Fran

Just got the news yesterday mom has stage 4 lung cancer. Her lung is collapsed and they give her 3-4 months. Chemo not an option because she is too weak. I, too, am an only child and my world is falling apart. Her drs and nurses are wonderful and have taken a liking to her/us. But she'll be leaving this week and I'm so scared.

She is strong, hasn't shed a tear, instead saying ok, this is what you gotta do... She says God's ready for her and she trusts He knows best. And selfish me just says "What about me? I'm not ready for her to go!"

My problem is I don't know where to begin looking for help. They talk about sending her home which is in a small town 40 miles away from me. I have a roommate situation so bringing her home with me not possible. I plan to rent a 1 bedroom this week for us, but then what? Do I quit working to take care of her? I'm so lost and yes, I too cry in the shower so my little one who is 14 doesn't hear me.

Reading the entries here so that my mom is not alone is helpful. Blessings and thanks to you all.

Ruth

hi ruth,

i understand exactly how your are feeling. My mom was diagnosed quite recently as well and it is indeed very frightening

It's good that you are staying strong for your mom. You have to continue to be strong for her and for your child. I know it's hard but you will find the stregth somehow.

if you can find a way to live with your mom it would probably be best.

Have you seen different doctors and gotten several opinions. Perhaps there is a another solution like immunotherapy (strengthening the immune system)... or a lighter dose of targeted agents.

I know it is difficult. We have to be ready for the worst scenario but we also need to remain hopeful until the end. we have to fight this battle till the end and try all the possible options... there's hope. some of the stories shared here will give you strength... people getting better or even going in remission when it seemed like all hope is gone.

hang in there and keep us updated on your mom's health. My prayers are with you and your mom.

Good luck.
Fran

the stats are killing me! 3 weeks ago wife went to doc for rib pain and persistent cough. the cough started in nov. of 08, she strongly suggested a chest x ray. after the x ray they called for a ct (stat) after which they said "we are so sorry, you have cancer" and then basically gave here a good luck, god bless attitude. sent to pulmonoligist who said "I don't give survival odd's" and after his tests told us it was nsclc IV. non operitive. go see this doc. so I started researching and everythin said has said "no cure" survival rate "5 to 10 percent" I am flipping out. can anyone give me facts? I can battle anything if I have them.

thanking you in advance

Derrald

My father was diagnosed with stage IV lung cancer on September 07, we were told that surgery was not an option for him but it was his only possible cure; we saw three different doctors including a Dr at the MD Anderson, and we were told that surgery was not an option, my father is only 50 yrs old and we were giving a very bad prognosis. I have never giving up, I did a research online and found the best Drs and surgens for lung cancer and wrote to all of them, alot of Drs responded. we live in Austin TX we ended up going to Seattle WA where my dad had a rib an lung resection; he also went through chemo and radiation before and after surgery. On February of 08 we were told that he was cancer free but 7 months later we found out that he had Brain metastasis, we were debastated, because of the location of the tumor he can not get a surgery and he was giving of course a horrible prognosis, like I said we have never given up, he got radiation and a "new" chemo for the brain called Temador, it has worked wonderful for him, Drs. are very impress ans shocked of how well he is doing right now, for the last 6 months his Tumor in the brain keeps getting smaller and there is no desease in any other part of his body including the lung. The Dr. told us that he is doing better than 95% of the people with metastatic lung cancer and that the way he has reacted to treatement is all we can hope for. It has been terrible for my family but we have never giving up and we have done the impossible to get through this; dont let any Dr. or anyone to tell you how far you and your wife can get, keep fighting, do research talk to diffent Drs., look into medial trails, We were told by the Dr that my father is basically a miracle I am sure your wife can be too but never give up and keep fighting and you will be in my prayers.

Hi Derrald,

I don't know where you live, but I would keep looking for docs who can use creative or perhaps get her into a study. I'm in a support group and one of our members was in a similar situation and was put into a study and his cancer is in remission. Even the docs were surprised. He's doing great! There is another Stage IV women in our group who had a biopsy done to find the right chemo to hold her cancer back as much as possible. Time may be what you are buying but where there is life there is hope. They keep coming up with new drugs and treatments so keep in the game. One of our members who had prostrate cancer 4 years ago went to Yale, Sloan, and ended us with a new treatment in Atlanta.

Good bless you both during this difficult time.

Roseann

Got my diagnosis on August 15th. NSCLC adenocarcinoma. All happenned by accident. Turned out it mets to some of my spinal joints and the have started the same chemo regiman as you, and want to do radiationin a two months.
So far no adverse effects to the chemo.
Reading your post has brightend my day.
Thanks

andiques Thanks for that GREAT encouragement...My husband has just been diagnosed with stage IV NSCLC..We are waiting for our meeting with oncologist to discuss the facts about his cancer and treatment....It's also in some lymph nodes but no major organs (?) Was your's in you lymph nodes to ? His tumor is 56mm x 46mm. I actually hand wrote ALL of your story of encouragement for him to read... The Dr. said his prognosis was poor, and this kind of cancer is difficult to treat !!!! I't most difficult to deal with...

Fran:

Please keep in mind that each of us reacts to chemotherapy different, and that our cancers are going to be at least slightly different. It seems as if they are almost like fingerprints: while they are similar, they are never quite the same.

That said, I was treated with cisplatin for an original tongue/neck cancer following surgery (and during radiation treatments as well) back in '05 - '06. I can honestly say that the cisplatin was the worst of this experience. It made me as sick as I had ever been up to that time.

Even so, when I was advised I would be getting carboplatin and taxol on a weekly basis following an '07 lobectomy, many of my friends on this site warned me that they had received same and found it nauseating as well. I did NOT find this to be the case. I managed this cocktail quite well, actually, relatively speaking.

Again, it is an individual thing, I suppose. I will say that I had to skip several treatments second go-round due to low platelets and/or white blood cell counts. On the other hand, I received those treatments on a more frequent basis.

I am now NED, incidentally (NO Evidence of Disease).

As for Avastin, my understanding is that it is a first-line therapy, although it cannot be used in certain instances, particularly when surgery is recent or pending. You will want to verify that with OncoMan, of course.

Best wishes.

Take care,

Joe

hi joe,

thanks for your reply.

my mom's doctor has prescribed her cisplatin or carboplatin (depending on her choice) with paxitol as a 1st line treatment and she only added avastin or another targeted drug for her 2nd line treatment.

I am a bit worried about this.... perhaps my mom should get a 2nd opinion but she seems to trust her oncologist...

I am glad that people like you (who has survived this) exist to give us all hope.

regards,
Fran

hi joe,

thanks for your reply.

my mom's doctor has prescribed her cisplatin or carboplatin (depending on her choice) with paxitol as a 1st line treatment and she only added avastin or another targeted drug for her 2nd line treatment.

I am a bit worried about this.... perhaps my mom should get a 2nd opinion but she seems to trust her oncologist...

I am glad that people like you (who has survived this) exist to give us all hope.

regards,
Fran

Dear Ruth,

I am glad to know that your mom will finally be getting treatment and you now have hope for her to save this devil!

If you mom is quite weak, maybe you can ask your doctor on the possibility of having a chemo sensitivity test, to find out which drugs would not work or would be least effective...

i do not know much about it... and my mom will have to probably go to another town to have it as they do not have it everywhere.....

My mom is doing fine for the moment. She is still doing her Whole Brain Radiation (WBR) and once she completes that she will have to do a CT scan to check if it is working... then 1 month rest to recuperate and then she will be starting with chemo. My mom has brain and bone metastisis.

Keep me informed about how your mom is progressing with her treatment.

Good luck and let's pray for the best.

Fran

Hello everyone,

I am new to CSN. I was diagnosed with a lung tomour in June last year. I underwent surgery to remove the upper lobe of my left lung followed by 12 weeks of chemo and later 6 weeks radiation. Abnormalities were noticed in both lungs even before the radiation treatment was complete.

I was put on 150mg daily dose of Tarceva almost five weeks ago. Does anyone have experience of how long it takes with the drug before its starts to show improvement?

my Dad has just started this drug after receiving chemo (he has stage IV NSCLC) he couldn't finish the chemo so they decided to put him on Tarceva....i'm wondering also if anyone has any comments (good or bad) about being on it.He was Rx in JAn/09

I'm taking Tarceva - I have NSCLC with brain mets. I began with 150mg daily which was way too much, considering I weigh in under 80lbs these days (which isn't as bad as it sounds as I'm short). I shortly broke out in hives and my face swelled up so badly I could barely see. After some adjustments - reducing to 100mg, taking every two days instead of every day, and dealing with a round of pinkeye brought on by the Tarceva, I think I've hit the right dosage - three days on and one day off! My oncologist gave me the latitude to experiment so that I get maximum medicinal effect with minimal side effects.

I get terribly dry skin with this medicine, too, but I've found Eucerin Plus Intensive Care lotion to be nothing short of miraculous for this.

At my last scan there were no new growths, I'm due for a PET scan at the end of this month...

my husband has supposedly been in stage 4 since dec.07..he was doing chemo and radiation and i think even though he was getting sooo nauseas and loss of appetite, he should have continued with chemo via i.v six months of tarceva and it just didnt do nothing. but everybody is different. the only side effect he got from the tarceva was a bad rash.my husband is a fighter and we will not give up.god bless you.if in 2-3 months , you see its not working...move on to the next treatment option, dont wait, like some doctors do.!!!

Luckily, my doctor, like most, doesn't belong in that category; he's always looking out for the next treatment for me, and we keep an eye on the scans to see what works and what doesn't :) I think of Tarceva as a holding drug - it may not kill the cancer, but it keeps it from growing (well, I hope so anyway). In the meantime, who knows what new thing will come down the pipe!

You have a wonderful attitude, and not only does that probably make it better for you, but also for your family and friends. I hope your docs get that, and spread that positive vibe to other patients. I'm amazed at my mother's attitude as well (SCLC) - her ability to really take things one day at a time is enviable. But maybe this is God's gift that is given to those faced with the ultimate challenge... to really live each day without regrets for the past, or worry for the future.

All the best to you - please keep us posted.

my husband was diagnosed with stage iv lung cancer 14 months ago. they tried 6 of the best chemo drugs out in the market. Cancer still growing even with chemo. he was told nothing more can be done for him medically. my question is: how long might he live? what do i expect? i will hate to see him in pin. thanks

my husband was diagnosed with stage iv lung cancer 14 months ago. they tried 6 of the best chemo drugs out in the market. Cancer still growing even with chemo. he was told nothing more can be done for him medically. my question is: how long might he live? what do i expect? i will hate to see him in pin. thanks

my husband was diagnosed with stage iv lung cancer 14 months ago. they tried 6 of the best chemo drugs out in the market. Cancer still growing even with chemo. he was told nothing more can be done for him medically. my question is: how long might he live? what do i expect? i will hate to see him in pin. thanks

There is no one who can say how long, Docs have said I have out lived their longest expectations. What you can do is look to each other with strength and love. Enjoy the time that is not what might be. I realize it is hard, if you have read my bio you may notice that I know what pain is, and hate to see anyone suffer, but if he can enjoy what he has left isn't that better than trying to count days, months or whatever. You have time now, enjoy it as best you can, no one knows when our time is up, but we do know we're alive now.
Our prayers are with your husband and you and your family.

Dan and Margi Harmon

I was diagnosed on Dec 18 2003 with a pancoast tumor. It was inoperable and they really didn't know what to do with me. THey didn't think I could survive it because the tumor was sitting on the top of my right lung, not inside and pushing my esphogus over in the frontand growing into my spine in the back. I underwent chemo and radiation for a total of 6 months with radiation twice a day for the last couple weeks. I have now started my 6th year of remmission when no hope of surviving existed. As a result of this i have also developed horners syndrome which they say should have put the nail in my coffin.I am going to be 54 years this month and no matter what I wake up each day and live it the best way I know how becauseI don't know what tommorrow will bring. Pancoast tumor patients are not supposed to survive more than 5 years. I am truly blessed. If anyone else has this type of cancer I would love to hear from you.

God bless everyone
Diana

Hi,

I was diagnosed in Feb.2009 with stage 3b Pancaost tumors with Horners Syndrome. Surgery wasn't an option. Been doing chemo(carboplatin & taxol)for the last couple of months,no bad side effects.Mine is also on the right side and has invaded the lymph nodes of arm , neck and heart. So what has life been like for you ? are you still doing treatments ?
I would love to talk with you more and compare treatments and what goes through our brains with this crazy disease.
Thanks for the posts of HOPE !!!!!

I'm a bit lost here. My husband (45) was diagnosed on Aug.27,2009 with Small Cell Lung Cancer stage IV(SCLC)......NOT Non Small Lung Cancer(NSCLC).

I read here of people that have small cell lung cancer, but when you read there post they are talking about NSCLC.

I need to know if there is anyone out there that is a survivor of Small Cell Lung Cancer stage IV and if so how long since you were diagnosed, and what is the treatment you are getting and why.

He had fluid removed from the lining around his right lung (the tumor is in the right lung)and was told that they are almost sure there is cancer cells in it(sometimes cancer cells are so small they can't see them). They have also said there is a spot on his liver that is cancer.

He has had one cycle of chemo, Carboplatin and Etoposide. He said that he could breath better and his cough got better just after the first day of chemo.

He goes again for chemo on the 16th,17th and 18th of this month. He has been feeling fine, You would never know he has cancer. I'm the one that is a wreak.

I have been reading and reading and reading everything I can find on the internet about this. But so far I can't find anyone that has had SCLC :-(

I'm not going to give up or let him give up. I don't care what the doctors say about how long he might have. I just keep doing my research.

I know this is an agressive cancer and that is why time is of the essence. We meet with the doctor tomorrow and I am going to tell her I want a scan done before his next round of chemo.

I don't want to find out later that something else could have been done or his chemo changed because of what they find after the second cycle.

He has taken all his records,lab slides and scans to the Northwestern University of Robert H. Lurie Comprehensive Cancer Center, where they have an oncologist that specializes in the lungs.

I'm going to call the number they have here for help with finding clinical trials, after I find out more from the doctor tomorrow or after his next chemo.

If anyone can suggest anything else that I should be doing or know of a doctor or trial we can try, let me know, or if you think that a PET scan and or radiation of the brain should be done now.

God bless everyone on this site, you and my husband are all in my prayers.

Sherry :-)

WE ARE ALL TERMINAL. MY MOMMY MADE HER TRANSITION JULY 10 from lung cancer. I am 22. I have seen my brother murdered and the only good thing left in this world left me. SHE IS STILL HERE THOUGH!!!!! GOD BLESS EVERYONE....CANCER IS HARD LIFE ISNT. WE ARE BORN 2 DIE. MY ONLY WISH?PRAYER is that when i leave this hellhole i will see my mommy again. APPRECIATION IS THE KEY. LIVE ONE DAY AT A TIME. MOMENT TO MOMENT. WE WERE ALREADY BLESSED.

Please find someone you can share your struggles with. You'd be amazed at how your friends and family are willing to listen. Your husband probably would be too if you let him know how much you need the support. As family/caregivers we all want to do something, and if being a sounding board is what the patient needs, then I guarantee you we're happy to be there. Sometimes a listening ear is all we can do...

From another Nancy